I’ve got lots of myeloma related news to pass along. Let’s start with some disappointing news from the Leukemia and Lymphoma Society (LLS).

A loyal reader, Linda, emailed me recently, opening this way:

Hi Pat,

At my LLS blood cancer meeting last week, a representative from the LLS was there and talked about new directions and fewer donations. Sounds like difficult times for non-profits. She said the $100 per year given to blood cancer patients has been suspended as of February of this year…

How unfortunate! When I was diagnosed back in the spring of 2007, the yearly, no-strings-attached stipend amount was a whopping $500. It dropped over the years to what was the current $100. It wasn’t a lot, but I remember feeling a bit less despondent after hearing I was eligible to receive it from the social worker at Mayo Clinic. The money helped. But more importantly, it left me feeling like I wasn’t alone and someone cared. If I hear that they’ve accepting applications again I’ll let you know.

Dr. Kumar started out giving an ASCO review, but I quickly derailed him into talking about how and why allo transplants are making a comeback in myeloma patients. He discussed the topic for ten minutes or so. I learned a lot.

Like so many others, Dr. Kumar is pinning his hopes on new immunotherapies like daratumumab and SAR. He also spends time debunking the theory that continual maintenance therapy is always best for a patient. As always, I was impressed. Dr. Kumar is a very bright guy!

Finally, a support group leader from a small southern Minnesota town, sent this email:

Pat,

My heart goes out to you as you maneuver the roads of getting a new chemo drug.

However, this post today is one of the most important you’ve EVER posted. I often speak to myeloma patients, that do not have a myeloma specialist. The first thing, I tell them is that they need to see a myeloma specialist. Not all oncologists can be an expert on every cancer and myeloma changes so fast it, can be hard to keep up with. I mean changing fast in the patient and new discoveries on the drug front.

Recent contacts I’ve had has been, one patient, is taking Doxil, cause they weren’t aware that there was financial help available for Revlimid, another patient feels that he is at the end, because he feels bad and doesn’t realize the roller coaster of feeling bad and recovery, back and forth on this disease, that he can take chemo and get out of his rut, I’m telling him not to give up. Others feel they’ve taken a chemo and are now permanently o.k. Help!

That’s why your blog is so invaluable to myeloma patients, keep up the good work!

Thanks for the kind words! She was responding to a post I wrote June 19th:

She emails me often with questions from group members and I help whenever I can. Apparently this paragraph from my post hit close to home:

Still think a patient doesn’t need to understand his or her options? Someone in a mid-sized town that’s not seeing a specialist–or taking part in his or her therapy decisions–may not even suspect that there’s more than one direction to go. Their doctor will simply tell them that he or she is prescribing a new drug or drugs. With no medical standard of care, which drug(s) will they choose? I’m not comfortable with a medical oncologist using their smart phone to skim through a couple of therapy reviews, then prescribing a drug combination that they may have no experience administering…

So many from online communities know so much about myeloma related therapies and diagnostics. But that constitutes a miniscule 3-4% of patients and caregivers living with multiple myeloma. What about the rest?

Sure, a much larger percentage may spend some time online early on, but then do very little follow up or self education. Another 1% attend support groups that aren’t also very active online. That’s it! What about the other 95%? I use the example of “Someone in a mid-sized town.” What about rural Americans? I correspond regularly with a caregiver from rural Nebraska. The closest medical oncologist is hours away. And I believe he and his wife travel over six hours to get to Mayo Clinic to see a specialist. I’m betting if a neighbor is diagnosed, they’re likely to skip the Mayo clinic part and stick with that medical oncologist–or possibly receive treatment from the local small town doctor.

And there’s no guarantee that someone will see a specialist, even if one is available nearby. I often hear, “I’m comfortable with my doctor.” Or, “I don’t need a specialist.” From members of my support group north of Tampa; not exactly stuck out in the sticks!

Then there are our international readers. They turn to us because with a few exceptions, new myeloma drugs are going to be tested and approved here first. How many of those hundreds of thousands are seeing someone that would qualify as a myeloma specialist here in the States?

The online myeloma community has come a long way the past six years. But there’s much more work to do. And I plan to hang around long enough to do my fair share!

Feel good and keep smiling! Pat

10 Comments For This Post

Good job, thought there aren’t any other small southern MN towns that have a support group, I could be quite easily identified, but not the people I spoke with which is the important thing. I never gave you their names and some of the people I mentioned were friends of my family that have myeloma. So I think it went fine…it’s too late now anyway!ha! Good Job!

Pat,your reader was “spot on” as the Brits would say. When I asked Dr. Kumar why Mayo’s survival was so much better than the data from the average of the National Cancer Institutes SEER data, he answered in a very humble way. However, we as patient advocates know that we need someone who takes a total understanding of myeloma for granted and doing the right thing for the patient is just like muscle memory or “myeloma memory”. Great post. We must find a way to get this message out to the 95% who have never heard of myeloma. Best Regards/Gary

Pat,
There are a number of programs used in medical education to enable interns, residents & attendings to get familiar with illnesses. These programs are supposed to be routinely updated to remain current with THE best practices and standard of care. For example, UpToDate has a summary written by Dr. Rajkumar, most recently updated through April this year, with the literature review current through May 2014. The staging section was last updated last September about the time I was challenging the deputy editor about its currency. My point here is that information from ASCO & ASH may be available to physicians in more remote areas, as may be information from programs such as UpToDate. But that doesn’t mean that those physicians have ever treated an MM patient. And the information that any physician receives “over their smart phone” can be premature or out of date.
And beyond that, each of us is unique. Again I point out that I am a runner. That means that my creatine level will test high. It did over twenty years ago, and it is at the same level today. So I don’t need to be treated for renal failure. My oncologist was concerned until I literally brought in old test results.
What I am getting at, is that we need to be a bit more than adovcates in our treatment, but instead partner with our physicians (as you so clearly do), to determine what treatment might offer the better outcome. And the only way to do that intelligently is through self-education, joining online or in person support groups, reading the information, you Suzie Rose & Nick post. Going back to Gary’s posting of the SEER data, I wonder what percentage of patients merely followed unquestioningly the treatment laid out for them by their doctors (whether MM specialists or not). I wonder how that data would change if a much higher percentage were actively engaged in their treatments.

Good point, Jack! Yes, my support group co-leader called and checked an hour after I ran my post. Co-pay alive and well. Obviously two different programs.

Thanks, Gary! Modest or not he does make a good point. Trouble with these stats; they can be influenced in unknown and unexpected ways. My response: be one of the patients that cares enough to get your butt up and out to one of these exemplary centers!

And I hear you, Brian! I run into a number of online education courses–available at little or no charge–for nurses and docs. Patients are encouraged to join in.

I’m one of those patients Brian that basically followed the treatment laid out before me. In my case, I was urgently admitted into the Huntsman Cancer Institute because of spinal cord injury from a 5cm plasmacytoma. It just so happened that John Huntsman had also recently hired Dr. Guido Tricot away from Ark. However, once I was introduced to Dr. Tricot, and heard what he planned to do to me, I drilled into his schema. I sat with his chief of research to understand the purpose of each drug, the specific cadence/schedule, Dr. Tricot’s history, and comparable treatment plans just as TT. But yes, had another doctor been in place, I would have fell right in line….I had very little choice.

Nothing wrong with trusting a specialist, Doug! We’re referring to patients that are seeing a local medical oncologist (most patients) that don’t have a lot of experience treating multiple myeloma. No worries! He’s a great doc!

At the time Pat, I didn’t know the difference between a specialist and a general onco. The timing was perfect for me. Dr. Tricot is an amazing doctor and person…..I couldn’t be more pleased. I value his friendship a great deal.